Perceptions of young adults with sickle cell disease concerning their disease experience

摘要: Aim To describe the perceptions of young adults with sickle cell disease concerning their experience. Background Sickle is a lifelong, genetic condition both acute and chronic painful exacerbations. Little known experiences disease. Design This study used qualitative, descriptive design semi-structured, life review interviews. Methods Between August 2010–September 2012, purposive sampling was to recruit participants diagnosis who were ages 18–35 years, being seen in an outpatient clinic English speaking. Participants provided demographic information responded two interviews. A content analysis then interpret participants’ narratives living disease. Results/findings A sample 29 consisted 79·3% females, 35·6% employed full-time or part-time, 71·6% single/never married 57·8% anaemia. Their mean age 25·8 13·2 years education. Four major interview themes identified: (1) struggles maintain achieve good quality satisfactions; (2) strategies self-care; (3) interruptions family, work social roles; (4) difficulties accessing needed health care. Conclusion Young face many challenges while disease. With better understanding experience how it influences life, researchers can begin tailoring appropriate interventions improve outcomes this vulnerable, minority population.